waiting on the Lord – Page 5 – Jesus is for the Wounded

The 5 1/2 hour window of time

Published on June 23, 2014June 23, 2014 by Jesus is for the Wounded1 Comment

Ready to head home with the 24-foot outrigger and ama on the roof! — Ready to head home with the 24-foot outrigger and ama (float) on the roof!

So grateful to be out with my River Bear!

We came to a clearing in things and went for it!

These pictures were taken after a wonderful evening paddling our tandem outrigger canoe (OC-2) on Sylvan Lake here in Indiana. How wonderful to be out on the water for a second outing with Steve this year. I am so very grateful!

Sadly the evening ended worse than the earlier part of this day. Tic attacks had started in the car on the 45-minute ride home. Within an hour after getting home and unpacking the car I was feeling sickly. We ate some quick salads before I scampered off for bed, still in my paddling clothes. Low grade seizure attacks ramped up over the next hour, escalating into one of the worse episodes I have had in a long time. Screams of terror filled our home. The best that I could do was hold on and focus on continuing to breathe . . .

Eventually I was able to call Steve for help getting off the damp clothing and showering. In my stupor and neurological collapse (requiring complete assistance to transport myself to the bathroom) I figured out that I must have gotten exposed to the blue green algae we encountered in the narrower sections of the lake. I had taken numerous precautions to limit exposure to the water. However, some simply cannot be avoided when splashing about, paddling from an open cockpit of an OC-2. And perhaps the slimy green pond near the port-a-potties in the parking lot were releasing aerosols that were not to my liking as well? I didn’t touch any food or the mouth of my water bottle since we did not have hand sanitizer with us. I guess it wasn’t enough: I am too sensitive to any form of biotoxin to get anywhere near them in any form until things change.

Thankfully after about three hours I regained motor control of my body. I was better able to communicate and we processed what had occurred this evening. Steve agreed that we probably need to limit paddling together to waters treated for algae, such as the private lake of a friend’s home. This means not being able to join the local kayaking group outings on Tuesday night for the third year in a row! That’s a major bite in the shorts! To get strong enough to go out with them for two years was a major accomplishment for me and lasted until I got sick October 11, 2011. Just getting into a kayak (and now an outrigger canoe, solo and tandem) simply had never happened before I married Steve. We have so many great memories being a part of the group in addition to his kayaking competitions. (Goooooo Steeeeeeve!) Sigh. And I was really enjoying the switch from a kayak to an outrigger, sporting my carbon-fiber bent shaft paddle too. So awesome.

Last night I watched most of the video story again of Justin and Christa Vanderham. Christa suffered from chronic Lyme disease and mold exposure for years before finding proper treatment with antibiotics, supplements, and nutrition. A fellow sojourner in recovery and reader of this blog graciously reminded me recently that Christa’s illness looked a lot like the videos that I have posted here and on You Tube. Yes, both our symptoms of distress appear wretched: intractable pain for Christa and relentless seizure attacks for me. We both scream at times due to our agony. In chronic Lyme and biotoxin illness it’s not the exact matrix of symptoms that is so significant as it is making sure you have the right diagnoses and treatment protocols to get well. We don’t say that we have different illnesses because our symptoms are a little different. We do say that we both might benefit from similar aggressive treatment protocols if reasonable test data and clinical presentation indicate Lyme or biotoxin illness. Unfortunately for me, EVERY SINGLE TREATMENT INTERVENTION exacerbates daily seizure attack episodes that average 3-4 hours per day! I simply cannot survive the treatment protocols of which I am aware to date. The multiple chemical sensitivities (aka Chronic Inflammatory Response Syndrome) already leaves me largely homebound to try and prevent noxious symptoms. Lately they are on the rise again (up to 8 hours!) regardless of where I am or what I am doing. When I take a 5 1/2 hour window of time when the symptoms subside and test the waters, so to speak, I usually pay dreadfully for doing so. This gal just can’t get a real break I guess. I keep trying the wrong things. On the surface, you could say that I am out of options . . .

Regardless, this I know: my Jesus goes before me and knows the desires of my heart. He knows that my heart is breaking right now to realize that I can no longer be with my dear husband 2 to 3 days per week when he pursues his sport on the water. I learned to kayak to be with my River Bear and was delighted to discover that I enjoyed it too (at a slower pace of course!). My Lord knows how isolated I am when I am home alone because of this illness. He has provided the safety and security of a lovely dwelling with plenty of time with my Heavenly Husband. He was my best buddy before I met Steve; He saw me through life changes equally as traumatic all the way to the restoration process in due time. I’ll be hanging tough and trusting Him with this door closing on open water activities, no matter how I may feel about it. The fact is that my Lord and Savior loves me more than I can ever know. He wants what is best for me. I will wait with great expectation at His throne of grace for His plan for me, whether or not a new door or window opens in due time. If I don’t lay down my will for His will then I will denounce all that He has shown me of His love for me in the past. I don’t want to waste all that I have learned. During those trials is when my faith grew to be what it is today. That is when the Holy Spirit became real to me, guiding me and comforting me always. Nothing can take that away from me. Nothing will.

Gentle Reader, do you know faith in God like this through His son, Jesus Christ? Please share with me your experiences if you do. I know it will encourage me to hear from you in addition to other Readers. Oh and if you could say a prayer for my Stevers that would be great. He hasn’t been getting much sleep lately. Thanks a bunch.

Better finish that mulching project in the gardens soon. Love to you, Just Julie

A Psalm for Times Like These

Published on June 21, 2014 by Jesus is for the WoundedLeave a comment

Psalm 40

New International Version (NIV)

For the director of music. Of David. A psalm.

¹I waited patiently for the Lord;
    he turned to me and heard my cry.
²He lifted me out of the slimy pit,
    out of the mud and mire;
he set my feet on a rock
    and gave me a firm place to stand.
³He put a new song in my mouth,
    a hymn of praise to our God.
Many will see and fear the Lord
    and put their trust in him.

4 Blessed is the one

    who trusts in the Lord,

who does not look to the proud,

    to those who turn aside to false gods.
5 Many, Lord my God,

    are the wonders you have done,

    the things you planned for us.

None can compare with you;

    were I to speak and tell of your deeds,

    they would be too many to declare.

6 Sacrifice and offering you did not desire—

    but my ears you have opened—

    burnt offerings and sin offerings you did not require.
7 Then I said, “Here I am, I have come—

    it is written about me in the scroll.
8 I desire to do your will, my God;

    your law is within my heart.”

9 I proclaim your saving acts in the great assembly;

    I do not seal my lips, Lord,

    as you know.
10 I do not hide your righteousness in my heart;

    I speak of your faithfulness and your saving help.

I do not conceal your love and your faithfulness

    from the great assembly.

¹¹Do not withhold your mercy from me, Lord;
    may your love and faithfulness always protect me.
¹²For troubles without number surround me;
    my sins have overtaken me, and I cannot see.
They are more than the hairs of my head,
    and my heart fails within me.
¹³Be pleased to save me, Lord;
    come quickly, Lord, to help me.

¹⁴May all who want to take my life
    be put to shame and confusion;
may all who desire my ruin
    be turned back in disgrace.
¹⁵May those who say to me, “Aha! Aha!”
    be appalled at their own shame.
¹⁶But may all who seek you
    rejoice and be glad in you;
may those who long for your saving help always say,
    “The Lord is great!”

¹⁷But as for me, I am poor and needy;
may the Lord think of me.
You are my help and my deliverer;
you are my God, do not delay.

(Amen.)

The Next Step is Sideways

Published on November 13, 2013November 14, 2013 by Jesus is for the WoundedLeave a comment

Sometimes you move forward. Sometimes you move backward. And most of the time you just go sideways or don’t move at all! Know what I mean?

When I worked in rehabilitation we had another phrase: recovery is always a jagged line. A person makes progress then might regress a step or two before making the “big gains” in strength, walking, functioning, and the like. Many times my patients would not believe me when I said this to them. I understood their frustration. In our fast-paced, achievement and results-oriented American society, it is really tough not to be getting ahead in some way every day. Well as the old Starkist tuna commercial used to say, “Sorry Charlie.” Sometimes it just doesn’t work out that way.

Not only does every person not always get where they want to go, not every person gets selected to try for his or her dreams. These can be a real bummer for sure. How we handle these delays or changes in the course of our lives may likely determine our character. Certainly how we respond reflects our maturity as adults, or for Christians, whether or not we are trusting in the Lord who promises a plan an purpose for our lives (Jeremiah 29:11). While there are probably other reasons we could explore ad nauseum, I’m going to leave it right here. Ultimately we must get over the failure to achieve the goals we have set for ourselves when it just isn’t going to happen. You just never know. Something better might be on the horizon . . .

Several times I have planned to complete a special project and was never able to start it. (This has happened a lot over the past two years!) In general, the main reason wasn’t even procrastination. The reason often has had to do with the reality that something better is waiting for me in the future. Take my decorating idea folder, for example. About twenty years ago when our drapery panels in our living room became damaged from the sun, I really wanted to create a custom window treatment that I’d seen in a magazine. Somehow I would need to design a tracking system where the wall met the ceiling before such systems were even available. We didn’t have any wood shop tools at the time and I was unfamiliar with the fine art of making draperies. However I did know how to sew and had a creative streak so that was enough for me to move forward and figure it out. Sadly, it wasn’t meant to be.

The townhome got sold with the sun bleached draperies pinned from behind to hide the sections that were threadbare. The problem? My former husband doubted my ability to complete the project. Where would we get the materials? How would we install it? Where would I find the time to make everything? All of the ongoing questions discouraged me from trying to find the answers. A creative person makes something happen along the happy journey of figuring it out. He or she doesn’t have everything worked out at the start unless there is a pattern or kit with instructions. This decorating project simply was too much for the two of us to come to an agreement. It wasn’t meant to be back then.

Flash forward about ten years later and it was meant to be. Through unfortunate circumstances I found myself single and rebuilding my life in another city; so much had changed. To pursue a creative project would become “occupational therapy” for me and help me to make my new place a home. I knew exactly what window treatment would adorn the sunny sliding glass door that overlooked the lush courtyard beyond my balcony. This time the time was right.

A co-worker told me about a textile company that sold unbleached muslin by the pound. Yeah, that’s right! Yards and yards of fabric would be super cheap and just right the right color and style for my project. I even found material to line the panels all through that poorly marked, rusted back door entrance to the factory. There were huge bolts of fabric everywhere! “Yeah God,” I said to myself. This is good!

The next challenge would be measuring and cutting an inordinate amount of material on the laminate floor of my 3rd floor condominium. To say my knees were hurting from crawling around cutting all that fabric, would be an understatement. Then I wondered how was I going to sew all this yardage at my modest kitchen table? The answer soon came when I was house-sitting in a lovely home a short time later. The man of the house was a contractor and had a HUGE desk in his office for viewing his drafting plans. That desk was perfect for sewing yards and yards of fabric too: spilling all over the place in their spacious loft. Cool beans. I sewed and sewed to my heart’s content. Cool beans again.

Now to make the tracking system to suspend the panels next to the ceiling. Somehow I stumbled upon a lumber store just off the railroad tracks in an industrial area of a neighboring town. The guys at Owl Lumber in Lombard, Illinois were great. Not only did they help me configure the crown-molding style curtain rod, they metered the corners and pre-drilled the holes for the mounting pegs for me as well. I installed about a dozen pegs into the crown molding, sanded, painted it white, and coated it with polyurethane. Now all I had to do was mount it on the wall . . . without a ladder . . .

Gratefully I had an extremely sturdy coffee table that became a suitable platform for the installation. (You simply could not kill that wooden beast so it followed me through 8 moves over the years. Finally it got sold on Craig’s List 5 years ago!) I got all the tools and supplies together, my friend Jeannie came over for dinner and a little window treatment project, and we gals went to work on a Friday night. The only problem was that the building was over 30 years old and there was concrete not wood studs underneath the drywall! My wood screws would never hold the weight of the solid wooden rod that measured about 8 feet long. Oh well. Back to the hardware store I would go for mega concrete bolts and a new drill bit. Of course I had a darn good drill that would handle the job. 🙂

The next hurdle was the fact that Jeannie was not available the next weekend to jump back into the project again. What was I do to? How could I possibly wait when I was this close to pulling it all together? This thing was massively heavy and I was hoping to mount it at a height that would require me to hold it at a height near the end of the reach of my arms overhead. How could I do this alone without dropping it on my head? By sheer will power and determination, that is! I figured out the measurements of the holes for both the wall and crown-molding rod and pre-drilled the holes. I figured that if I could slip in a few bolts by hand and tighten them, they would hold enough for me to get the rest of the bolts in as well. I also used my head . . . literally! And with only one close call, Lord willing, I gotter done! Success!

The finishing touches to hang the panels were beautiful silky-type cording that I found at a local drapery supply store. Wow: so cool to live in a large city at the time where I found a place where practically half of the store was drapery trims and tassels! I made a loop and tied it with a Josephine macramé knot, reminiscent of 20 years earlier when it was first vogue to macramé. I was single then too and had macrame’d lotsa stuff! Hand sewing the loops to the panels was a labor of love, quite meaningful for me. Then I was ready for my big reveal to, er, myself. Would it all come together? You be the judge. I loved it! To open it each morning I gently draped a loops hidden on the backside of the middle of the bottom of each panel to hooks on the wall along the outer sides of the panels. At night I released the loops and the panels closed like the massive curtains at the end of a theater stage play. Yeah, it was cool. Yeah, it was worth the wait. I was stoked and thanked the Lord for restoring the years the “locusts had eaten” once again. (Joel 2:25)

This is an important story for me to remember years later. I’m in a situation now where I can’t do projects like this as I recover from a serious illness. I am grateful for the Lord’s gift of writing and the warm reception to my eBook released a couple of weeks ago (see side panel for details). Just this morning I was wondering what would be next? Then I realized that I really can’t do anything more right now. The book got finished because I had some better days; those days are gone for now. I’m hoping to catch up on some long overdue regular medical appointments like an eye exam tomorrow morning. EEEEK! Will ya look at the time? Anyways, these next few weeks I won’t be moving forward. I’ll be taking care of the stuff on the back roads, so to speak. Perhaps there will be other types of meaningful discoveries along the way, perhaps not. For now, the stuff of life has my time and attention.

Maybe you can relate? Whatcha got going on this week, Gentle Reader? Do take care, k? JJ

Yes, no, and wait

Published on October 5, 2013October 5, 2013 by Jesus is for the WoundedLeave a comment

They say that the Lord answers prayers with three responses: yes, no, and wait. I believe I have experienced all of these in a big way this past week!

Yes. The answer was “yes” to the question of whether or not I would like to be admitted to the Indiana University (IU) Methodist Hospital Neurology Unit. After an intense appointment with a neurologist in the IU Neuroscience Center, Dr. R. offered an overnight “observation” stay for a video EEG. The hope was to capture the tic and seizure attack episodes to clarify my diagnosis and treatment. So with the clothes on my back (since we were 2 1/2 hours from home), my husband and I followed the epileptologist’s advice and proceeded with the admission procedures. I’d had 2 hours of sleep the evening before and a major episode in the office of the neurologist that morning. Surely I was primed for plenty of episodes as the day progressed!

And that is exactly what followed: at least a dozen more full blown or brief episodes captured on video with dozens of electrodes glued to my head and a heart monitor attached to my chest. The rest of my Tuesday was wretched. One good part was finding some food to eat on the hospital menu fit my Candida diet, yes! The staff was nice. Many unfortunate frustrations occurred as well; you’ve heard enough of those on this blog so I won’t elaborate. The biggest frustration was seeing the inpatient neurologist twice for about 60 seconds each time he visited my room. He never looked at my MRI films or my medical records! His job was to do the EEG study and nothing else so that’s all he did. Perhaps that is all I could take anyways? Who knows.

No. I do not have epilepsy. O.k., my Lyme/mold literate doctor kinda knew that already. The hospital neurologist said I needed to follow up with the Neuroscience Center neurologist for treatment or any next steps in my care. The answer was also “no” to having one of my 3x/week IV magnesium infusions while the IV was still in my arm. I usually have a tic or seizure-like episode when it is inserted or removed so I was grieved when they could not help me with this; I would need to make up the appointment at Dupont Hospital in Fort Wayne, back home. The nurse pulled the IV; another episode followed, off camera.

There were plenty of other “no” replies over the 24 hour stay in the hospital. Perhaps you know what it is like? I was ordered to be on bed rest and fall precautions, tethered with multiple probes, monitors, and a bed alarm. Geez. At least they let me use the bathroom after initially forcing me to take a bowel movement on a commode in the room within view of the video cameras. Geez again. Eventually I was too exhausted to care if the back of my hospital gown flung open. Finally, after 2:00 a.m., I got 7 straight hours of sleep. A miracle for an inpatient setting, no less. Thank you Lord!

Wait. These past 2 days since returning home have required patience with myself as I recovered from the whole ordeal. My dear husband drove a total of 5 hours two days in a row plus participated in the neurology appointment on Tuesday and completed a partial day of work on Wednesday. Steve is a saint, I tell you! So we both have waited for our bodies to recover from exhaustion. I will need to wait to speak to the neurologist at the Neuroscience Center as well. Her nurse was not able to return my phone call Thursday or Friday. Steve and I are waiting and wondering what’s my treatment plan? Do I have one?

My heart is breaking with another project that must wait at the moment: publishing my eBook: Hope Beyond Lyme: The First Year. I need to transpose the final edits into the document formatted for publication. I’m about 3 hours from pressing the “go” button! This must wait until I can concentrate better. I just feel too traumatized and drained by the hospitalization experience. Perhaps it’s all I can take now anyways? Who knows.

I do know one thing: writing is one of the best therapeutic agents for me to come back to my senses! I am sooooooo grateful for you, Gentle Reader! You keep me sane! I am grateful to report that I had a 27-hour reprieve from noxious events yesterday and two less events overall thereafter. Being away from home and in the hospital (with a limited pharmacy for supplements and compounded medications) forced me to go off most of my prescribed treatments. This may have been a blessing in disguise! I’ve started an elimination schedule, gradually adding back one item at a time and recording my symptoms. Turns out that one of my supplements is made from mold! Chucked that one last night after a bad episode. Not sure what caused the one tonight. Oh well. It was around 10:30 p.m. I always have a severe episode then anyways. Got any ideas?

Yes. No. Wait. Perhaps this week is no different than any other with these three answers to prayer, to the desires of my heart. I am so glad that I can trust the Lord with any answer that comes from Him.

1 John 5 ¹⁴This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. ¹⁵And if we know that he hears us—whatever we ask—we know that we have what we asked of him.

And when the answer does come, the one we have hoped for with longing and expectation, it can be as joyful as a wedding celebration:

John 3:29 ²⁹The bride belongs to the bridegroom. The friend who attends the bridegroom waits and listens for him, and is full of joy when he hears the bridegroom’s voice. That joy is mine, and it is now complete.

I am somewhere between the themes of these two verses, knowing that He cares for my needs and has a Divine plan that includes all of the events of this past week. In the meantime I must keep my eyes focused on Him lest they wander to places that will get in the way of healing. I will rest in the promise that has meant so much to me these past 10 years. His love prevails and will carry me through all that is to come. Perhaps it will encourage you too?

Romans 8 ³⁸For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, ³⁹neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

Potato Chips Made Me Better

Published on August 15, 2013October 26, 2015 by Jesus is for the WoundedLeave a comment

Did you know that Detroiters eat an average of 7 lbs. of chips per year, as opposed to 4 lbs. in the rest of the country? If it’s true, it must be due to the Better Made

snack company that has dominated the potato chip market in Michigan since it began in 1930. As for me, I can say that these chips made me happy as a kid growing up in the Detroit area. When I would walk into my grandparents’ home in the country on Lake Columbia, my eyes would quickly scan the top of the refrigerator. I knew it was going to be a good visit if there was a family sized bag of Better Made potato chips up there! The same was true at home, especially if there were any left after my dad had already snarfed his evening share of chips with a bowl of chocolate ice cream. Yes, it’s genetic. My family loved potato chips! (I recommend the folded, slightly browned ones with the extra trapped salt and crunch!)

Flash forward a few decades and even today, a chip has the power to make me happy! Of course I can’t justify the simple carbs and canola oil combination of Better Made potato chips on my special diet so I had to find a replacement. Let’s see, if there was a crunchy treat that had relatively low salt, 4 grams of protein, 5 grams of fiber, no sugar, 14 grams of carbohydrate, and all non-GMO ingredients, would you go for it? Well I checked them out and found my new favorite: Beanitos are better and made for me! The pinto bean and black bean varieties have clean ingredients and no guilt . . . unless you eat more than, say 12 chips! Better buy a couple of bags or there might not be any left on top of your refrigerator tomorrow! Or maybe they need to manufacture a Family Size Beanitos too?

Well that’s all fine and dandy but what does it have to do with finding hope while recovering from Lyme Disease? In my life, having a treat, an escape, is an essential part of coping with the trials and suffering of this crazy illness. The ingredients in Beanitos barely count as cheating on my protein-oil-vegetable diet! I thank the Lord for the little things: round crispy, slightly salty, and satisfying too!

Long before I would crash and burn this evening, paralyzed by seizure attacks with difficulty speaking, moving, and even feeding myself a sip of water, I imbibed in munching on a few chips. I am grateful for such a simple pleasure as this to take my mind off of the nightly terrors that have been anything but pleasant these past few weeks. When the health food section of our local grocery store remained sold out of my fav bean chips, I planned to head straight for the health food store as soon as I was well enough to drive. My delight came today. Yippeee! Both flavors were in stock and “jumped” into my shopping basket as I walked by! Those happy feelings were to fill my tummy once again.

God’s Word teaches us:

¹⁴Therefore, since we have a great high priest who has ascended into heaven,^[f] Jesus the Son of God, let us hold firmly to the faith we profess. ¹⁵For we do not have a high priest who is unable to empathize with our weaknesses, but we have one who has been tempted in every way, just as we are—yet he did not sin. ¹⁶Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need. Hebrews 4

Yes. Once again my Prince of Peace met me today in my time of need. This day and always He satisfies my soul that cries out for His mercy when I am in times of crisis — and when I need a little treat as well. Sometimes the little things mean a lot. As for me and my refrigerator, we will keep a steady supply of crunchy treats within reach a while longer. As for me and my house, under the spiritual leadership of my husband and best friend, we will serve and wait on the Lord. In all things I am truly blessed.